Thursday, July 31, 2008

Yesterday's procedure really set me back. We had to re-up my pain meds, which was a little disappointing. I feel more like I did before I left the hospital. I guess that is what happens when they reopen some incisions and then pull out a 6 inch tube that was inside me. Yesterday was a real tease. Not only did I get IV meds and knocked out, they also did local anesthesia. So my entire middle was numb almost the whole day.

Sorry that is all I can post today, I have to go lay back down. The dizziness and light headedness on top of the pain makes anything but laying on the couch impossible. (I don't think "headedness" is real word, but oh well I am in to much pain to figure out the correct grammar.)

Wednesday, July 30, 2008

I'm back from the hospital and heavily drugged so you have all been forewarned. Everything went as expected. The drain was accidently caught in the stitches. It took more time to prep me for this than the actual procedure. I woke up quickly, actually before they were completely done in the surgical room. And now I am just back at home to relax and recover. After the IV meds wear off I will be in slightly more pain then I was this morning, before this procedure. But, damn I am happy that stupid drain is gone. It was a real pain.

This next paragraph is not for the light of heart. Friends and fam you don't have to read it. It is more for those who have been through this or are about to go through this surgery.

After waking up from this procedure today, I experienced the "anal leaking" I had heard about. I heard that it feels like you need to have a bowel movement, but no not me. I had no notice. At first I thought my period was back (lovely Aunt Flo decided to visit me in the hospital while recovering surgery. How about that for timing?!), but then I realized there was more "in back" then "in front". So I am donning a pad and hoping that helps. Later I felt a odd urge so I went back to bathroom and expelled more bloody mucus. But, it definitely didn't feel anything like having to go the bathroom. I don't get grossed out too much with bodily fluids, but this was surely high on my gross-out meter. Which reminds me, in future postings I should tell you of my 1st 2nd and 3rd bag accidents. Actually 2 of them were not my fault. And one is quite comical. But I will save those for another day. I'm off to lay down and enjoy my meds.

Tuesday, July 29, 2008

I had my appointment with Dr. Kim to remove my JP drain. Unfortunately Dr Kim couldn't get it to budge either. He gave it a few tugs and agreed that it wasn't moving. So, tomorrow I go in to the hospital. The plan it to knock me out and open me up and see what the drain is caught on. Dr. Kim and my nurse/mother-in-law believe it accidentally got caught in some of my abdominal stitches. Hopefully that is all it is. It should be quick and simple procedure with me coming home later that same day.

Off topic, but still important to me. If anyone has any spare prayers or good thoughts, my cousin Cody could use them. He is currently in the hospital. He had a procedure done and it ended up getting infected, he'll probably be hospitalized for quite awhile now. Aunt Cindy and Uncle Doug if you read this you all are in my heart!!

Monday, July 28, 2008

Did you all miss me? It is good to be home. Currently my mother in law, Becky, is here helping to take care of me. She has been a true God send. I had no idea how much help I was going to need. It is hard and frustrating not being able to take care of yourself.

I am feeling okay. I still have a good amount of pain and I'm still on the pain meds (percocet). But, we were able to cut the dose in half. Surprisingly I have a lot of pain in my lower back. At the hospital a nurse told me it was partly because the doctor contorts your body during surgery, since he needs to access both sides of you. I also have abdominal pain. Besides all the pain I am extremely tired. I get out of breath and light headed very easy. Today is the first day I am actually able to sit up more. Before I got very dizzy and out of breath while sitting.

This morning I visited the ostomy nurse. It was my first adventure out since the surgery. And lets just say it wiped me out completely! The nurse was very pleased with me. She said most young people do not accept and embrace their ostomy like I did. The nurse did tell me, I probably won't be able to wear pants while I have the ostomy. Unless they are very baggy and I have a very long shirt. The doctor put my stoma right on my belt line, and since I have a small frame the bag is large on me and hangs down to almost mid thigh. Good thing it is summer and I stocked up on sun-dresses! (Thanks Aunt Pam for helping me with that!!) I don't know what I'll wear once fall comes. Oh well, I have plenty of time to think about it.

Tomorrow I have an appointment with Dr Kim, the surgeon. He is going to attempt to remove my drain tube. Currently I have a tube coming out of a little hole in my belly. It drains fluids out of abdominal cavity. I can't wait to get rid of it. A doctor at the hospital attempted to remove it, but she couldn't. She tried three times to pull it out. And all three times I screamed like a banshee and the tube didn't budge. It felt like she was trying to pull all of my insides out through a tiny hole. It was a little bothersome since she pulled with all her might and it didn't even move an inch. She said that she has never seen a drain tube that would budge before. They think I might have developed an adhesion to it. So let's just say that I am very nervous to have Dr Kim remove it tomorrow.

Well that is about all I can type for today. I must go lay down. It took a couple sessions just to get this all typed out.

Saturday, July 26, 2008

Great news readers..... Steph is currently in her home on HER couch. She is managing the pain very well and in good spirits. She is hydrating constantly and eating fairly regularly. Hopefully she will take this job back over very soon, as I know she is by far the better writer.

Thanks to all of you for your support during these times. It is real nice to know people care, and I believe Steph's progress has benefited from the support.

Thursday, July 24, 2008

Steph had a BIG day today. She saw 3 Doctors, 3 or 4 nurses, 2 PCA's, a Pharmacist, a nutritionist, a Stoma Nurse, a Massage therapist, and a spiritual advisor. Wew that wore me out. Any way she took a really good walk around the halls, which is a great thing. We have her surgical pain down to a 6 out of 10 which is great, but we are still battling the head aches.

Steph also shifted from the IV pain meds to the oral meds; percocet, Ibuprefen, and Dilaudid. The Orals are working better because they last longer than the IV meds. This is helping steph's lucidity, and coherentness, and she is defiantly more alert today than yesterday.

Steph did eat twice today: Cream of Wheat this morning, and a Banana smoothie for lunch/dinner. She seems to be getting a bit of an appetite back.

In other news the Ostemy is working well and she is learning to use it. Everything is plugging along according to schedule. We are very proud of her, She may be the strongest person I know.

The best part of Steph's day was going up to the 5th floor of the Hospital. The 5th floor is the Healing garden. It has a Labyrinth, a Tropical Garden, and a beautifully outdoor seating area. What a great View. Steph spent a good 45 minutes there soaking in serenity.

Currently Steph is paying the price for so much action. She is extremely tired and sore. I hope that she gets some sleep tonight, as she has not slept good for 2 days. We probably over did it today. Tomorrow we will not.

Wednesday, July 23, 2008

Well, the surgery is done and Steph is handling it like she handles everything, with grace and Toughness.

The Surgery went a bit longer than we anticipated (between 5 and 6 hours). We arrived at ST Mary's at Noon, and Steph was not taken back for surgery until around 3pm, and did not make it to her room until somewhere around Midnight. Long day for everyone.

Dr Kim, was pleased with the way the entire surgery went. He stated that Steph had no complications. The good Doctor also took pictures of the colon after he removed it, and showed them to us.....Really Cool Stuff. (maybe if we get a copy we will share them with you?).

Steph did not sleep much last night as we were tackling the pain issue. We all know, Steph loves to try new things, including pain meds. We are currently on Dilodin, Cause the morphine was not up to the job (made her very itchy).

Steph's experience at ST Mary's has been very good so far. The Doctors and Nurses here are great, always willing to help and eager to make Steph's recovery as painless and comfortable as possible. The two Nurses that are caring for Steph (Molly, and Laura) are two of the best nurses I have ever seen. Their bedside manner is awesome. What a great Hospital.

Overall Steph is doing great, and We hope to get her home by Saturday.

Monday, July 21, 2008

I met with the stoma nurse this morning. She was very informative. All of my questions were answered, even some questions I didn't know I had. Now I have a purple marker spot on my stomach where the stoma will be. I had to sit, stand, bend over, dance, all that stuff so we knew the stoma would not interfere )too much) with life. Or I should say so life doesn't interfere with the stoma and it's connection to the bag. The marker she used on me will stay permanent on the skin for up to two weeks. The only mistake the nurse made, is she gave one of these markers to Scott! So, consider yourself warned and do not pass out if Scott is anywhere in the vicinity.

Today I am just a wee bit nervous. But mostly I am hungry! I can only have clear liquids today. Fun! I think I am going to eat my weight in jello. Then, this evening I start the real fun part of prep. . . the purge. At 5 pm I will take 2 different types of laxatives. It is five times the recommended does. Joy. Basically my night will be spent entirely on the toilet. The only positive part is after this is all said and done I will never have to take a laxative again (even for prep work!).

I can't believe I am going to have surgery tomorrow. It still feels some what unreal. This can't be happening to me! These things don't happen to me, they happen to other people. I've never had surgery before. Heck, I've never even spent the night in the hospital before. The only times I have been to the hospital were once for a migraine and that one time in college when I fell out of bed. Yup, I fell out of bed and landed in the ER.

I plan to post as soon as I am well enough to after the surgery. In the meantime Scott will do a couple updates on here so you all can stay in the loop. Thank you everyone for all your love and support. I have felt a little less alone on this journey.

Sunday, July 20, 2008

Yesterday was the Tour of Lasts. My day kicked off at my favorite hole in the wall breakfast joint. I had this awesome bagel sandwich (egg, cheese, bacon, and I swear an entire avocado). We then decided to swing by our local little coffee shop. Oh how I am going to miss coffee. Lucky me, I happened to have a coupon for a free drink. Any drink, any size. So, why just order a 12 oz when I could get a larger size, right?! I tell the barrista I would like the biggest size she had. Little did I know it was a 32 ouncer! Seriously. As you can imagine, with a start to the day like that I wasn't even hungry again until dinner time. Dinner itself wasn't anything too special or exciting. Just homemade pizzas. Making homemade 'za is one of our favorite things to do on a stay-in Saturday night. But, for dessert. . . bellinis! (champagne & peach nectar) Now, normally I'm not a foo-foo kind of gal. I am more of a beer or occasional red wine person. But for the Tour of Lasts I had to go out in style!

Today I am on a full liquid diet and tomorrow is just clear liquids. Joy. Of course, all I can think about is all the food I should have ate yesterday.

Otherwise for how I am feeling, I am incredibly rundown. I can't wait for Tuesday. I just want to get this over with. Today I realized the real purpose of that to-do list I've been battling all week. It was to keep me so busy that I was forced to keep my mind off of the surgery. Ah, lets just say it worked well then.

Tomorrow in the early AM I meet with the ET nurse. There I will get to find out where my new little friend, the stoma, will be residing for the next 3-4 months.

Saturday, July 19, 2008

I have already started to pack for my hospital stay. I know I don't need to bring a lot, but there were a few things I'm bringing just in case. It better off to be prepared.

Ear plugs- I have a low tolerance for annoying noises like repetitive beeps. Also pain meds tend to invigorate this character trait. I once, while medicated, yelled at someone for reading the newspaper to loud.

Eye shades- In case I am trying to pretend that I am sleeping.

Antibacterial hand gel- Yeah I'm a germ-a-phobe. And what's the worst place for a germ-a-phobe (besides the port-a-potty)? That's right a hospital.

Slippers- Now this is a two part answer. A.) Those one-size fits all slipper socks they give you don't really fit all. To give you an idea, the four year old I use to nanny for and I could share shoes (now granted she had exceptionally large feet, but you get the idea.) So the socks that fit a grown man are annoyingly bunchy on me. B.) I know I will hate seeing the dingy bottoms of them after I do my laps around the floor. Then they will creep me out when I climb back into bed with them on, with all those germs they must have picked up. Ew.

Robe- To prevent me from putting on a free show while attempting to walk.

Fully loaded iPod. I have it full of songs, videos, games, a tv show or two (I'm thinking Flight of the Conchords) and some stand-up comedy. I don't know if humor is the best idea, laughing is going to hurt. But, they say laughter is the best medicine.

Phone- No I won't be taking any phone calls, so don't call me. I'm bringing it for the games on it!

Books

Magazines- In case I am too doped up to really read I can just look at the pretty pictures.

Friday, July 18, 2008

I don't know if I have really gone into detail explaining my upcoming surgery. HERE is a good site to learn more on it. It does a better job then I could explaining it all. My only problem with it is the last sentence; "Patient satisfaction with this surgery is high and with both ulcerative colitis and familial polyposis patients, their disease is cured!" Unfortunately for FAP patients our disease is never "cured". I will always have to under go monitoring by scopes multiple times a year. Polyps can grow in my pouch and duodenum (which we all know I already have). FAP patients also have a 80% chance that polyps will grow in their stomach. Other areas that can grow tumors are skin, bones, thyroid and abdomen. The abdomen tumors are called desmoid tumors. 20% of patients will develop desmoid tumors after a colectomy. So basically what this tangent was all about is, I will never be cured.

Sorry to be so doom and gloom. But that is the truth of FAP. After I recover some from this first surgery, I will meet with a genetics counselor. Then we will begin to have a better understanding of the rest of my "risks".

In other news, yesterday I made the appointment with the ET (enterostomal therapy) nurse. I will meet with her early monday and she will mark me with sharpie where ostomy site should be. Everyday it becomes a little more real.

Have I shown you guys where I'll be recovering yet? Check this place out! It seems more like a resort than a hospital! Scott can't get over how excited I am about this. But hey when you're in my shoes you have to relish in all the positives you can. All I have to say is they have a meditation labyrinth, outdoor healing garden, complementary holistic therapies (ie. acupuncture) wifi, plasma tvs, and it is LEED-certified (basically means that it is a 'green' building). Silly the things I get excited about, huh?

*Yeah I know the chance that I'll get to experience these things while I'm there is slim to none, but it doesn't mean it isn't cool.

**Did you like how this post went from all doom and gloom to positive? Yeah I'm good at that.

Thursday, July 17, 2008

First off Happy Birthday little brother! I hope you have a wonderful day. I love you!

Fatigue. Wow, the fatigue is catching up with me. I am so tired that I have found myself taking midday naps. Now that is something I haven't had to do since college! I don't know if it is the stress of the impending future or if it is the state that my colon is in.

(By the way, if any one would like to see pictures of the polyps in my colon. Let me know. I uploaded the pictures taken during my colonoscopy. It is crazy to see, but it might not be for everyone.)

I am realizing that the timing is right for this surgery. I doubt I could have ignored my symptoms much longer. I am having to go to the bathroom at least 6-10 times a day. And the amount of blood has definitely increased.

Both the fatigue and the frequent bathroom trips are making getting my "to do before surgery list"

a little more difficult to complete. That and the fact that everyday I add something to it.

Well, speaking of that to do list, I probably should accomplish something off it today. Plus I want to go play with my new iPod. Figure that is a must for recovery.

(All pictures in today's post are of the future Dr and his also future Dr girlfriend)

Wednesday, July 16, 2008

People have been asking me if I am scared. Yes I am scared, but I am not scared of the surgery itself. I completely trust my surgeon, Dr. Kim. There are absolutely no qualms there. So, what am I scared of you ask?

I'm scared of finding out I'll have to have chemo.

Or finding out I have some form of colitis (which by the way the surgeon said he wasn't ruling out. In a nutshell that means that I have an increased risk of the pouch failing and complications.)

I am scared of the catheter and the NG tube (nasogastric tube, it is a tube that is passed through the nose down into the stomach to keep it empty). I know what you're thinking, of everything I am about to go through those are what I'm scared of?! Yup, I guess I have an issue with tubes coming out of my body.

The pain meds! I tend to have weird reactions to all kinds of drugs. I can't even imagine how I'll react to the pain meds.

I am scared of being lonely in the hospital. I know my parents will come visit me. And I know Scott will be there as much as his work allows. But still.

And I am scared of loosing my colon. (strange huh?) I guess I have a bit of a love/hate relationship with it. It hasn't been really good to me, and I am hoping that life its better with out it. But I am still loosing an actual piece of me.

On a whole, I am scared of the unknown. But when it comes down to it isn't that what we are all scared of?

Tuesday, July 15, 2008

Well, today marks the one week out point. I would like to tell you that I am ok. But, I think that would be a lie. Lately I have been dreaming about the surgery and then last night I couldn't fall asleep. So, obviously it is weighing heavy on my unconscious. How am I coping you ask, well let me tell you. . .

First off I have the longest "to do" list ever. It is officially two pages long now. Mainly it is all chores and phones calls I want to get done before the surgery. Not knowing much about my recovery, I want to be prepared. For example, yesterday I found myself on the ground scrubbing my baseboards. I thought heck probably will be awhile before I am able to do this again. It is almost like "nesting". You know, when a pregnant woman finds herself compelled to clean and prepare the house before going into labor. Yeah, its kind of like that. But unlike the pregnant woman, who when she leaves the hospital will be bringing home a new bundle of joy, I'll be leaving the hospital minus one major organ. But I digress. . .

I am also trying to remember to savor the foods that I may have to limit or avoid in my post-colon life. I have a meal planned for every night this week. Tonight on the menu is Steph's famous Jerk Chicken. For those of you who haven't gotten the opportunity to experience my Jerk Chicken, it is hot. Real hot, like 5 alarm hot.

Now I have a project for you, my lovely blog readers. I need book and movie recommendations (along with those FAQs I asked for a few posts back). I am looking for things that will help keep my mind entertained as I heal. I already have a good start to my book pile (Big thanks to Aunt Colleen and and Aunt Paula for helping out there!) So please let me know some of your favorite light reading or comical movies. Nothing to sad though, don't think that would help the mental part of recovery. I thank you all in advance.

Also another one of my coping mechanisms is to listen to music that either "picks me up" or helps my mind stay positive. My favorite is Dancing Nancies By Dave Matthews Band. Here's a little taste of the lyrics for your enjoyment:

Thursday, July 10, 2008

I decided that I would start to address some frequently asked questions. So, if you have a question feel free to ask! You can either email it to me or leave it in a comment on here. Come on don't be shy. Don't worry, you won't offend me. You can ask anything, doesn't mean I'll answer it though.

Ok so for my 1st FAQ:

Will we still be able to have kids?

Hm, tough one. The actual procedures themselves will not affect my reproductive organs. There is, however, a statistic out there that after an Illeoanal Reservoir you are 30% more likely to have fertility issues. But (and now for the real kicker). . . FAP is a genetic disease. If I were to have a child, my child would have a 50% chance of having FAP.

Now for a slight glimmer of hope. In vitro fertilization. Through IVF they are now able to do PGD (pre-implantation genetic testing) . They can test the embryos for the FAP gene and then only implant the embryos without the gene. But (again another big but here) approximately 20% of people with FAP do not test positive for the gene. That means that we could go through all this and still implant an embryo that had FAP.

So, with that said it all a huge crap shoot. As to what Scott and I

might do. . . We don't know. We would have to wait at least one year after my last surgery before even beginning to try, so we have some time to think about it.

As for the pictures in todays post, they are from The Fourth. Since the fireworks on the lake aren't quite so speculator anymore, my cousins and I created our own fireworks display. With glowsticks. Its good to be able to entertain yourself.

Tuesday, July 8, 2008

Why are insurance companies such a pain to deal with? After being on hold for an hour, I finally get a live person to talk to. And this live person's answer to my question is "to look at on their web page, I should be able to find all my answers there". Hello?! I didn't just wait an hour for someone to tell me to look on the internet, thanks.

I have also started looking into a specialist to deal with the polyps in my duodenum. I contacted a "Cancer Center" here in Grand Rapids. Well, after being transfered to four different people, I finally get a young lady who thinks she can help me. First, I ask if she is familar with FAP. Which she responds that she is. Then, I explain that I am having a total colocetomy, but I am looking for a specialist to help with the poylps in my doudenum (actually I don't even say duodenum, I say upper small intestines). She responds with "Oh let me transfer you to urology" Ha! I told her at this point I'm not having any problems in that area, and I thanked her for her time. I considered explaining to her that the small intestines has nothing to do with the urinary tract, but decided not to waste any more of my time. That's what I get for trying to find something a little closer to home. It is looking like Cleveland Clinic is the best and closest place for this.

Monday, July 7, 2008

Hope everyone had a nice holiday. We had a good time up at the lake. It was nice to spend some relaxing time with family. I think I took enough pictures to use in posts for the rest of the summer!

Other wise, things are okay. The surgery is two weeks from tomorrow. While I am not nervous yet I am scared. I am scared of the unknown. There is so much I don't know. How much pain will I be in? Will I be able to move much? What will my needs be? How will I be feeling? How long till I am able to function again? When will I be able to cook again? And so on. . .

I have never been one to admit when I need help. But I am foreseeing that I am going to need help while I'll recover. Admitting that is difficult for me. Probably since I have been taking care of myself for so long it is uncomfortable for me to even admit that I will need help.

I am the type of person who likes structure and order in my life. I like to be able to visualize what is going to happen. Unfortunately, I can't do that now. I can picture the next two weeks. . . then it is just blank. It is really bugging me that I do not know exactly what the future will be like. I guess that is something that I have to get use to.

About me

My name is Steph. At the age of 29 I was diagnosed with Familial Adenomatous Polyposis (FAP). This blog is my journey through life with this disease.
I hope to use this blog to provide a way for friends and family to know what I am going through both mentally and physically. I also hope to provide a place for others w/ this disease to see that they are not alone.